Stories of Hope

In February 2023, Erin Hicks and her daughter Madi faced a life-altering moment. After a visit to the National Institutes of Health in Seattle, Madi, a vibrant 12-year-old soccer player from Kansas City, Missouri, was diagnosed with juvenile dermatomyositis (JDM). “We walked out feeling overwhelmed and lost,” Erin recalls. Research fueled panic as Madi’s condition worsened, her energy fading on the soccer field. Hope was slipping away.

Ellen Stream’s love for her granddaughter, Brooklyn, fuels her commitment to the juvenile myositis community. When Brooklyn was diagnosed with juvenile dermatomyositis (JDM) at two and a half, Ellen faced a wave of fear. Would Brooklyn run and play like other kids? Could she enjoy school, sports, or friendships without the weight of infusions and flare-ups? Those early days brought uncertainty, but Ellen and Brooklyn’s other grandmother built a support system across miles, showing distance doesn’t dim love.

Sammie Fish was 14 when juvenile dermatomyositis (JDM, a rare form of juvenile myositis (JM) changed her life in 2017. A doctor’s warning that she might never reach remission, tied to a lifetime of medication, shook her world. But Sammie, now 21, didn’t back down. Today, she’s a college grad, a new teacher in her dream job, and Co-Chair of Cure JM’s Ohio Chapter alongside her mom. She walks for herself, for kids like her, and for a cure. That’s why hundreds of Cure JM families and friends across the nation join Walk Strong, because every step pushes us toward a JM-free future

At 12 years old, Emma’s world was turned upside down. An energetic cheerleader who loved spending time with her friends, she suddenly found herself constantly fatigued, her muscles weak and aching. What began as mild discomfort quickly escalated into something far more serious.

Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

Austin Krainz, diagnosed with juvenile dermatomyositis at the age of seven, overcame the challenges of a rare disease with the support of his family and pioneering treatment from Dr. Lauren Pachman. After more than a decade of battling the illness, Austin entered remission, fulfilling his childhood dream of professional racing in Porsche’s GT America series.

Spring break should be about fun and relaxation. Sandi and her husband Zack expected their trip to Mexico would be the same. Of course, taking

Two Grandmother’s share their story and experience when their granddaughter Emma is diagnosed with JM.

Sari’s pain began in September of 2018, during gymnastics practice. It started in her shoulder. She didn’t give it much thought. But then it worsened,

Alexandra grew up in Philadelphia. At eight years old, she was diagnosed with juvenile dermatomyositis. Her first symptom was pain in her cuticles whenever she

Kindergarten is about making friends, learning how to count by two’s, and reading Biscuit books. But for Madi, Kindergarten was not so simple.

Cadence was only 18 months old when she was diagnosed with juvenile dermatomyositis. Her mother took her to their pediatrician’s office multiple times, only for

Nathanael was an active 7-year-old. In the summer of 2014, he played baseball under the Southern California sun, and that’s when the rash started. “He

Natalia is seven years old, and in January 2021, she began experiencing pain. Everyday tasks were difficult. Natalia’s parents, Lindsay and Matt, reached out to

Olivia is four years old, and she’s been fighting juvenile myositis for almost two years. At the beginning of her treatment, Olivia’s parents, Leah and